Immobility

So it’s 2020 part three and I feel like I’m walking through knee deep treacle. It’s possible that I am undermedicated for dealing with Pandemic World. It’s also possible that any dose that would make me feel better would also knock me right out. Which is counter productive when you’re trying to get stuff done.

I’ve been failing to get stuff done for a while now, since before Christmas, and so far nothing has worked. Part of the problem is my shitty health. It seems to just keep getting worse and I’m starting to suspect that all my attempts to improve things are actually part of the problem. Maybe I need to rest more, not less?

Resting is all very well in theory but in practice I have stuff I want to finish. I’ve written a script for a Podcast and all that work will be wasted if I don’t edit it and record it this year. 

There is a part of me that feels like resting is pointless since I’m never going to be well again. Why not just push myself on until my body fails completely? Live fast, write hard and finish with the metaphorical handbrake turn into the grave – tyres smoking and not an ounce of rubber left.

Somehow this attitude is not getting any writing done either. People often tell me that I should be kinder to myself. I don’t know how to do that but it looks like I’m going to have to learn because nothing else is working. I need to discover how to cause things to happen without constantly shaming myself when things don’t happen. I need to learn how to create flexible deadlines suitable for a person who sometimes needs to sleep for 11 hours and sometimes can’t sleep for two days.

I also need to confront the fact that this podcast is going to suck. Of course it is. How could it not? It’s being bodged together by someone with zero relevant experience (me) and I can’t compensate for lack of experience or money by just working harder because any work at all is already as hard as I can work. I’m going to dislike it and I’m going to feel terrible for the friends who’ve helped me. At least no-one is going to know that it sucks because no-one is going to hear it because I have no way to attract an audience to it.

I’m still going to do it, though. I’m going to make the thing that I’ve decided to make even though it’s going to take far too long, and use up too much energy, and it won’t be very good, and no-one will know that I’ve done all this work. I’m going to do it because I have decided that this thing should exist in the world.

Transition

CONTENT WARNING FOR MENTION OF TRANSPHOBIA AND TRANSMISOGYNY 

I am a cis woman and I’m about to write about transness. Before I begin I would like to make it clear that I support my trans brethren. Trans rights are human rights, trans identities are valid, trans women are women, trans men are men, and non-binary people are exactly who they say they are.

I am not going to tell a trans story. It’s not my place as a cis person to tell a trans story. I’m here to write about the experience of watching the transformation that happens when a trans person becomes their truest self and the envy I feel.

Recently I’ve watched as two people I like and admire came out, one as gender fluid and the other as a trans woman. I was happy for them, and struck by how much happier they seem, but also by how pretty they are. How are they so pretty after such a short time taking hormones? I’ve been on estrogen my whole life and I look like a boot.

Incidentally I think that question might be behind some of the transmisogyny and transphobia aimed at trans women by so-called feminists. There’s this stab of rage that you can feel if you’re not happy with your own appearance and you’re faced with a trans woman who is just blossoming as she becomes who she always was. Why does she get to feel whole when I don’t? She’s not a proper woman. She doesn’t even have a uterus. Which is bullshit, of course. Trans women are not responsible for your (or my) low self esteem. They absolutely are women and no woman requires a uterus.

Some of you reading this are already thinking that this must mean that I’m trans and in denial. Nope. I’m definitely a woman. I already am my truest self. It’s just that I don’t like who that is. I’m not looking at trans men and wishing that I could be a man too. When I look at non binary and gender fluid people I see some amazing aesthetics that I’d love to be able to pull off but I don’t see an identity that I aspire to. 

I do want to transition but I want to transition into a woman that I actually like. I ache to be able to smile at the person in the mirror without faking it. I yearn for a body that feels like it belongs to me.

I don’t know what it’s like for other chronically ill people but for me it feels like I’ve been at war with my own body for a long time. It causes me pain, constantly, and I hurt it back by insisting on moving around and doing things. It would be so much easier to just lie down and die but I’m not going to give the bastard the satisfaction.

My body has no redeeming features. I look like a potato, I move like a badly made marionette, nothing fits and I’m never comfortable. And there’s not a thing I can do about it. There’s no surgery or pills that can fix my body or how I feel about it.

Which is one thing that I do have in common with many trans people. A lot of trans people aren’t taking hormones or getting surgeries. Some of them don’t want to do either, which is absolutely fine, but many more are blocked by lack of money or by medical gatekeepers. They shouldn’t have to suffer when the remedy for that suffering exists. They definitely shouldn’t be suffering just because no remedy for my suffering exists.

I suppose that I’m really talking about that suffering. I suffer because of my shonky body, and my terrible self esteem, but that terrible self esteem didn’t spring up out of nowhere. It comes from being told that my body isn’t what it should be. It also comes from my body not being equal to the tasks required of it. I suffer because of the constant gap between what I am and what I feel I ought to be. I can’t ever bridge that gap, and no-one should expect me to but I still feel the weight of that expectation. There’s also this unconscious expectation of a transformation. Stories are full of people discovering strange new abilities, of spontaneously transforming into some new form. I have this unconscious expectation that I should be transforming, that I should be finding some inner strength or previously unknown power. 

I want to say that such a thing just doesn’t happen but then I look at trans people and it feels like that’s what they’re doing, even though many of them talk about it as revealing who they truly are rather than becoming something new. 

As I’ve said before, my problem is that I don’t like who I truly am. What I truly am is disabled, dependent and limited. I can’t do half the things I want to and I’m having trouble accepting that because my mind keeps insisting that it’s just temporary. I need to somehow get over this because it’s keeping me from doing the things that I am capable of while I’m still capable of them.

Maybe the real problem is that I don’t see myself represented anywhere in the media. Disabled people only ever get to be victims, or monsters, and in order to be victims they need to be disabled in ways that are more visible and more socially acceptable. I don’t see myself anywhere except in the mirror. It’s no wonder that I can’t smile at the woman I see there. She’s a stranger.

Final chair update

This is it. No more chair. The part that needs replacing is no longer manufactured and cannot be replaced.

It should be possible. It shouldn’t even be hard. It’s not a complicated part. Replacing the part isn’t like time travel, or breaking the third law of thermodynamics on the macro scale. It would take one person with the right tools less than a day of work to make a replacement. It’s just not possible for me.

There seems to be no way forward. I’ll sit on this broken chair until either it dies or I do. We can’t afford to replace it. I don’t just mean that we don’t currently have the money; I mean that we absolutely cannot afford it. We can’t afford to service the debt and we can’t save up because it takes longer to save up the cost of the chair than the lifespan of the chair.

I often talk about how my life is a joke and the punchline is “you can’t get there from here” and here we are again. I can see my goal. It’s just over there. I can almost touch it but you can’t get there from here.

It’s just a fucking chair. It’s only money. Why is this so hard? What’s wrong with me that I can’t have a chair that I can sit comfortably in? Oh, that’s right, I’m disabled and poor. No comfort for me.

The Chair Update

For the saga of the chair see my last two posts here and here or just scroll down.

I still do not have a working chair. I still don’t know when I’ll have a working chair. I still don’t know how much it will cost. Nevertheless there has been progress.

A friend sent me a link to an appropriate company. An engineer from the specialist company came and looked at it and wrote a report about the extent to which it is busted and what needs to be done to fix it.

We now know that a part of the footrest lift needs to be replaced and that some of the upholstery is damaged and needs to be fixed or replaced. What we don’t have yet is a quote. I imagine it will cost less than replacing the entire chair. I certainly hope that’s the case. However I am half expecting that there will be some bullshit reason why they can’t fix it or, it will cost more than we can afford, or they’ll have to take the chair away for a couple of weeks, or there will be some other problem that means I’m stuck with this broken chair.

So what else is up with me? Well, I’m still querying. That has to be the most boring possible sentence to anyone who’s not a writer. To anyone who is a writer it can have myriade meanings. It can seem optimistic, heroic even, or it can induce a feeling of dread, or horror, or even guilt.

If you’re not a writer, or you’re new to writing and you don’t know much about querying yet, what it means when I say that I’m still querying is that I haven’t yet given up on the idea of getting the work that I’m querying traditionally published. And yes, before you ask, that might well be both insanely optimistic and pointless. But it’s not like I’ve got anything else to do today.

This week, in pursuit of displacement activity, I set up a spreadsheet to track my queries. It was a chastening experience to realise that spreadsheet software has moved on so much that my existing skills are basically useless. I probably need to do some sort of course. If you’ve got any recommendations for a free course in either Google sheets or Open Office spreadsheets then feel free to leave them in the comments.

However even my shitty skills are enough to be able to tell at a glance that I’ve submitted 4 queries this week. That doesn’t sound like a lot but each one requires a personalised letter, which requires a bunch of research into the Agent and their other clients, and also the customising of the synopsis. This week for example I had to write an entirely new synopsis because I needed one that was under 300 words. You can’t just cut a hundred words out of a 400 word synopsis and still get something readable. You need to write a different kind of synopsis, one that’s paired down to just the personal journey of the central character.

The other thing I’ve been up to this week is pain. Lots and lots of pain. Down to my last three Tramadol levels of pain. At first the pain was in my legs and was definitely caused by not being able to get my feet up often enough. However now it’s my arms. I don’t know if it’s the exercise I’ve been doing that’s triggered the pain, or if something has changed in my posture because of the leg pain, or if this is just a flare up that would have happened anyway but I do know that this level of pain is ridiculous. Nothing should hurt this much without an obvious cause.

Enough complaining. I’m going to wrap this thing up now. If you want to know more about querying have a look at the latest post on my author blog.

Just more of the same bullshit.

I’m back once again to complain about my chair. As I said in my last post my very expensive rise and recline chair has broken less than two years after I paid over £800 for it.

I tried to persuade myself that repairing or replacing it wasn’t a priority but my legs disagree with me and I’ve been in a lot more pain. When I say a lot I might not mean the same thing that you mean by a lot. I mean that I’ve gone from a level of pain that I can stand without recourse to painkillers while still taking some exercise, to taking a max dose of painkillers, barely being able to walk and not being able to sleep for the itching and the tenderness.

Fortunately we did have some money saved. It was saved to replace my other half’s busted desktop computer so I was reluctant to spend it but it’s becoming clear that we need to repair my chair.

Wouldn’t it be nice if things were that simple. It turns out that we can’t just get it repaired. It has to be sent back to the manufacturer. Only the retailer, once we finally got hold of the retailer, is claiming that it’s no longer under warranty. This means that our options appear to be to bodge a repair ourselves, which probably won’t be safe, or buy an entirely new chair, which we can’t afford.

There is still some hope. The manufacturer seems to think that the chair is still under warranty so it might be possible to get it repaired/replaced. I don’t really expect that to work. I expect that the retailer will wriggle out of it and I’ll be stuck with my broken chair and my painkillers.

Once again I find myself wondering just what it is that I’m supposed to do. What does the world want? How am I supposed to get over this? Which just shows you the inherent weakness in the gamer mindset. There’s this underlying assumption at the heart of my thinking that says that there must be some way to overcome this challenge. That’s because in games there usually is some way to win. It’s built into the game.

But life isn’t a game. There’s no designer. No grand plan. No built in way to beat it. I’m not supposed to do anything.

It’s hard to stop thinking like that. I think it’s part of the bundle of assumptions that come with the myth that we live in a meritocracy. I’m an intelligent person. Surely if I just work hard and pay attention I’ll be able to prosper and succeed.

We do not live in a meritocracy. Money and connections count for far more than hard work and talent. There is no level playing field. If you’re disabled it’s a struggle just to get to the starting line. If you’re sick it’s a struggle to move when the gun goes off. If you’re a woman or a person of colour then you have additional hurdles to leap and if you’re born poor you’re running an entirely different race with a much shittier prize.

And yet I’m still sitting here blaming myself for not being able to work out how to fix this chair with the resources available to me.

And after all that whining if you fancy reading something more entertaining and you’re curious about my writing why not check out this post on my author blog about ‘Project Kindness’.

Once again life kicks me in the teeth.

My chair is broken. It was incredibly expensive to buy because it’s a heavy duty rise and recline chair. The rise bit, which raises the seat to assist with standing, still works. So I can get up out of my chair. It’s the footrest that’s broken. That means that I can’t elevate my feet to alleviate swelling and reduce knee and ankle pain.

I know this doesn’t sound like a lot to you. I’ve been trying to persuade myself and my spouse that it’s not much of a problem. But it really is. I’m already in additional pain and it’s only been a couple of hours.

I underestimated how dependant I was on this chair. I’ve recently started a program of exercises to try and improve my mobility. It was going pretty well but I’m not sure I’ll be able to do any exercise that involves standing until I get this fixed.

Which will not be happening. I can’t afford to hire someone to fix it, even if i could let an engineer into my house during a pandemic. I can’t fix it myself because I can’t get up from the floor. If I lie down under the partially raised footrest to see why it’s not working I’d have to call an ambulance to get back up. My spouse can’t even see what the problem is.

I can’t afford a new chair. The last one was over £800 and given that it’s lasted less than two years I probably need to spend even more on the next one.

I am so very tired of this bullshit. I’m stick of being in pain. I’m sick of every attempt I make to improve things either failing or resulting in a temporary success that just makes the return to the status quo even more unpleasant. I want it to stop.

Lockdown update – Now featuring an all new Zeppelin Report

How’s your lockdown going? Well, I hope.

I haven’t left the house since March 11th and now that I actually could go outside to exercise I think I’ve forgotten how. To go outside. I haven’t forgotten how to exercise. In fact I’ve been quite serious about exercising at home since my left knee stopped doing an impression of a basketball made out of pain.

After more than a month of procrastinating my author website is now live. I can no longer remember why I thought a website was a good idea. This is one of those occasions where I need to have faith that past me had some idea what she was doing.

I rewrote the opening of Project Kindness as a result of some feedback I got from an editor. I think it’s better but I can’t be sure. I’ve sent it off to a couple of agents so we shall see if it does any better than the previous one. However I do feel that I’m approaching that I’m close to running out of agents to query with this novel. Then I have to decide to give up on it entirely, query small press publishers, or publish it myself.

It’s hard not to feel like a failure. I know, intellectually, that a book can be perfectly fine and not get published because it’s the wrong book at the time but that knowledge is hard to internalise. Even when I do succeed in taking on that lesson I feel like it’s still my fault because I should have finished it earlier and then maybe that would have been the right time. I also can’t help wondering if perhaps I am the wrong person to have written it.

Zeppelin Report

2020 continues to be all kinds of weird. The people of Bristol decided that it was finally time for Slave Traders to get in the sea.

The Overton Window is moving so fast that we’ve seen a few people get flattened by it. One moment you’re the controversial pundit the loony lefties love to hate and the next moment you are lying in the dust, sans Twitter account, wondering when good old fashioned racism got so controversial.

American cops are whining about being held accountable for their actions and they still don’t seem to have noticed that the debate has moved on, from prosecuting them when they break the law, to removing their jobs entirely and replacing them with something else that’s fit for purpose.

The Arctic is on fire. Again. But there’s so much going on this year that people have barely noticed. Sorry global climate disaster, you’ll have to come back next year.

Trump has been virtually untouchable thus far. None of his enemies have properly laid a glove on him. Even the impeachment seems to have been little more than an irritation. Americans are on the streets demanding change, the police are increasingly out of control and any other President would regard that as a crisis. Trump doesn’t care because it doesn’t affect him directly. He’s just using it as an excuse to throw his weight around.

So it was until this weekend when the teens got him with the cruelest of all mean girl tricks. It appears that a loose coalition of K-pop fans and TickTock kids came together to convince Trump that he was super popular and a million people wanted to come to his party. So he walked out onto a stage unprepared for an arena that was at one third capacity while outside his team were dismantling the overflow stage his campaign paid for.

That must have hurt. Probably not as much as getting tear gassed, or pepper sprayed, or getting shot in the eye with a rubber bullet, or being thrown to the ground hard enough to cause seizures or even crack your skull. So it’s not like things are even yet.

And finally… the shambling reanimated corpse of the Conservative party continues to pretend that shouting vague slogans counts as governing a nation through a double crisis. Everyone, including the Government, has used up their Brexit stockpiles just surviving Coronavirus but they’re not going to delay Brexit because… reasons.

Have they actually said what those reasons are? Even if Brexit was unambiguously the right thing to do when we decided to do it, and everyone was 100% behind it at the time, now is not the time to be going ahead with it. Imagine you were in the middle of packing to move house. If your town was hit by a horrific storm, and there was a flood warning for your street wouldn’t you call to cancel the moving van and tell them you’d reschedule once the water had subsided? Apparently Boris would be floating his sofa out to the semi-submerged van and complaining when the driver wouldn’t try to start it.

Accessability

One of the hidden truths of being disabled is that you can always get more disabled. Another hidden truth is that often the problem isn’t one of disability but one of accessibility.

On a related note my kitchen is even less accessible than I thought and now I’m sitting here hungry and waiting for takeout.

Feeding myself shouldn’t be this hard. Even during lockdown it shouldn’t be this hard. It’s not like there’s a shortage of Calories in my house. Available Calories, on the other hand, that’s an issue.

Allow me to explain: My spouse has some memory issues as a result of some stress and anxiety problems. That means that everything has to go where they expect it to be. If we change where stuff is kept they won’t be able to find it and they will get even more anxious. My spouse is taller and stronger than me and is able to kneel down. Therefore there’s a lot of storage space in our kitchen that they can use relatively easily, but which is much harder for me to reach.

My spouse also has a stacking disorder. That’s just my snarky way of saying that they pile stuff up in a way that is clearly structurally unsound and are then surprised when said stuff topples over, or falls out of the fridge, or catapults itself out of the cupboard on a toe-focused trajectory. Or maybe it’s not a disorder. Maybe it just looks like a disorder to me because my leet tetris skills make it obvious to me whenever things have not been less than optimally stacked.

Anyhoo, I volunteered to cook tonight and now I regret it. I’ve taken the max dose of painkillers and I didn’t even injure myself. All I did was wipe down the hob and get the pans out of the pan cupboard. But the pan cupboard is low. And the pans are heavy. And some of the can stockpile is kept in the pan cupboard. And that stacking disorder meant that a bunch of stuff fell out and I had to put it back and by the time I’d got the pans onto the now clean hob I’d used up almost all my spoons.

My kitchen, in the house that I live in, is not accessible to me. And I have no way of making it accessible.

Making the kitchen accessible has the same problem that I have with everything in my life. You can’t get there from here. Or rather, I can’t get there from here. I can’t fix the problems caused by my disability because my disability prevents me from doing the things necessary to fix it. I can’t hire someone to do it because I’m too poor (and also the whole global pandemic thing). I can’t save the money to pay for it because of all the money I’m spending on takeout. I’m unlikely to get any fitter, and thus more able to fix the kitchen, because my dietary choices are takeout, convenience food, or starvation.

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On a completely unrelated subject I’m working on a new author website. Yeah, I don’t know what I was thinking either. I must have been hit by some kind of optimism ray. It’s very unlike me. I’m not sure when it will be complete but my intention is to keep this blog going as my personal blog and to put the more… professional? … content on the author blog that will be on the author site.

At the moment the site is still under construction so I’m not posting a link. In this day and age it sounds odd to say that it’s under construction. It’s not like I’m writing the HTML myself, so why the delay? I’m new to thinking of myself as an author and I don’t know what an author website for me should look like. I’m taking it slow because I’m making it up as I go along. That’s going to have to be enough for now.

November awaits

It’s almost Halloween and therefore almost November and the beginning of NaNoWriMo.

For those that don’t know NaNoWriMo is National Novel Writing Month. It’s an annual challenge to write a 50,000 word first draft of a novel in 30 days. I’m the Municipal Liaison for my region. That just means I run the region forum on the website and try to get people to agree on dates and times to meet up in person.

If you’re reading this, and you’ve always thought that you might like to write a novel but you’ve never actually done anything about it, then maybe you should check out the website and think about giving it a try. It costs you nothing to attempt it, there’s no cost to failure either, but if you succeed then you’ll have a novel. Well, you’ll have a first draft of a novel but that’s a problem for another day.

Anyway, I’m deep into prep for writing my own NaNo novel. In a stunning plot twist I actually have an outline this year. Of course I still don’t have all the world building sorted so I’m putting things arse-about-face in a way that’s very much on brand for me.

In other writing prep I have some craft beer in the fridge and plenty of coffee but I don’t have enough chocolate in the house. I also really need to do my nails before November because ragged nails will slow me down. It’s a bit annoying that the best nails for typing would be short but I really want something long and pointy for halloween.

This last week has been a bad one for pain and not great for energy. I used up all the paracetamol in the house and was then too wiped out to go out and buy more. I feel like I’ve done nothing all week but that’s not being fair to myself. I wrote two blog posts for the Parlour of Doom blog and I’ve been busy on the NaNoWriMo website.

I am a little worried about going into a month of writing when I already have bad back pain. I might have to plan for only writing in short bursts because I have to keep stopping to stretch out the kinks.

My bullet journal continues to be a useful tool. If you have ADHD or just general problems with organisation and staying on target then I recommend trying it out. Not sure how useful it will be during NaNoWriMo but there’s only one way to find out.

I’m going to stop writing and post this now. I did try to edit it but my back decided to kick me in the kidneys again and the paracetamol is not helping much and it’s hard to edit with the pain sirens filling your brain.

Sunday Update 30/06 – So done

This week I am completely fed up with my lipoedema. June is lipoedema awareness month so it’s in my mind more than usual. I’m reading about the experiences of other people with lipoedema and I am angry.

I’m angry about the fatphobia within the lipoedema community. I’m angry about the lack of treatment options. I’m angry at the RAD (Rare Adipose Disorder) Diet that is often suggested for people with lipoedema. I’m most angry at the more than 30 years I had to wait for a diagnosis. 30+ years of being blamed, and condescended to and diets that would never have worked and my body getting sicker and sicker and only being diagnosed in the end because I heard about lipoedema and asked about it.

Everything I read about lipoedema worries me more. It’s possible that I’ve already missed the cut-off point for surgery, that my lipoedema is already too bad for the only specialist surgeon in Scotland to consider me as a patient. That’s a hell of a thing to find out when you have a progressive condition. Without surgery my arms and legs will continue to get worse and I will get less and less mobile.

I’m not even on the waiting list to see the surgeon yet. I’m still trying to make compression garments work. I have to make them work if I want surgery because recovering from the surgery involves wearing compression 24 hours a day. It’s not going well.

I’ve been trying to make compression work for about a year and a half and it’s just been one failure after another. Currently I’m trying with velcro compression wraps in the hope that they’ll be easier to get on. They are easier to get on. But they’re virtually useless because they won’t stay up. They slide down to the point of uselessness in the distance between my armchair and the kitchen. If I can’t walk in compression then it’s not a solution.

The alternative is the compression garments that compress better but that I just can’t get on half the time. They destroy my fingernails and blister my knuckles when I do have the strength to pull them on but I often can’t pull them on because my triceps just give up. And I can’t wear them if I have to go anywhere because they slide down.

So I end up wearing sports compression leggings. Those are expensive, they don’t compress well enough and as my legs get worse I’ll eventually be too fat for them.

Maybe part of the problem is my mindset. I’m viewing my body as a problem to be solved and then feeling like a failure because I can’t work out how to solve it. Maybe there isn’t a solution? Maybe this is just a thing that has to be accepted? Maybe I should buy myself a sexy looking mobility scooter and stop worrying? As it is I’m going through a lot of pain and frustration to try and preserve mobility which might already be doomed.

Perhaps it’s time to stop trying to fix my body and start trying to fix my life. The important thing is where I’m going not how I get there. Is it really worse to get there using a mobility scooter or wheelchair rather than a walking stick? Perhaps I need to decide what I want to do and then work out what adjustments I’ll need to make in order to get there.